Anyone suffering from EDS or a similar “invisible” illness can understand how frustrating these words are. The event that finally made me start this blog involved hearing this from a cardiologist who two weeks earlier had told me that I had a hole in my heart.
The experience I’ve had with this doctor deeply saddens me, but also strengthens my resolve to become a physician who respects and believes in my patients. Upon first meeting Dr. Norton (name changed to protect his identity), he failed to take a few minutes to ask about my life and try to connect with me on a personal level. In all experiences I’ve had with physicians, both as a patient and while shadowing, this has been key to providing the best care possible. You cannot effectively treat your patient if you do not know them, if you fail to understand their lifestyle and how it is impacted by their symptoms. Cookie-cutter patients just don’t exist.
I received a copy of his notes from this appointment and saw that there were multiple errors caused by his failure to ask important questions about the history of my symptoms during the exam. When he told me I had an Atrial Septal Defect (ASD), he in no way explained what it was and simply told me we would do an echocardiogram with a Bubble Study. Because he didn’t bother to get to know me, he assumed I was just an uneducated patient who wasn’t deserving of an explanation because it would be a waste of his time.
I spent the next five days or so thinking my life was about to change drastically, that I would have bypass surgery and a difficult healing process that would be worsened by the EDS. (Understand that I had to do my OWN research to find this out, because he didn’t bother to tell me what complications accompany such a defect). So when during the test no hole was detected, I was speechless. As it happens, he couldn’t actually diagnose the ASD until performing the test, and therefore put me through all of that emotional distress for naught.
My most recent encounter with Dr. Norton involved a stress test I had done a few days ago, which was the last straw. After the test he told me my results were above average compared to his typical patients (most of whom are double or triple my age with congenital or other heart problems), and that I seemed perfectly normal. When I asked him why I get dizzy doing lunges and squats during workouts, his answer was that perhaps I wasn’t in as good of shape as I used to be (keep in mind, I’m a 22-year old woman who lifts weights 4 days/week). He then suggested that maybe I should warm up before I work out, but if he’d taken that time to get to know me he’d know that I have an academic background involving health and exercise and I’m smart about warming up before a lift. When I asked him to explain why I suffer from unpredictable presyncope, dizziness, shortness of breath and tunnel vision, he said I’m just going to have to live with it. He continued to provide essentially one-word responses to my questions; answers that insulted my intelligence and offended my lifestyle. The appointment ended with him announcing that there was nothing more he could do for me.
And he’s right, there is nothing more he can do for me. I’ve been so fortunate to have met with almost exclusively wonderful doctors who respect me, understand that I am well-educated in topics relating to healthcare and believe me when I say something is wrong. But when I do encounter a physician like Dr. Norton, I’m not willing to roll over. I’ll keep looking until I find the right cardiologist who is capable of getting to know me as a human being and taking all of my symptoms and my lifestyle into account.
I’m not sharing this story to complain about a crappy doctor (okay, maybe a little). I’m sharing this because there is an important lesson to be learned: YOU ARE IN CONTROL OF YOUR HEALTHCARE. YOUR DOCTOR WORKS FOR YOU. No one knows your body better than you do, and it is important to trust yourself when you think something is wrong. As a future physician, I can tell you that doctors do not know everything and one doctor is not right for every patient. If you’re not happy with your treatment plan or the outcome of a physician encounter, then change it.
It’s time more people start taking control of their healthcare, and it’s time more doctors start personally investing in the lives of their patients.
- Role of a Cardiologist (cardiodoctor2013.wordpress.com)
- The Importance of Hiring Services of a Qualified Doctor (immediatecaretopatients.wordpress.com)